-
I won’t apologize for having 3 children with Duchenne MD
I have always been an open book about my life. I am a writer, caregiver, and mother living in the Midwest with my family. My husband and I have seven children: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie all live with Duchenne muscular…
-
FDA clears trial testing Mesoblast cell therapy in kids with DMD
The U.S. Food and Drug Administration (FDA) has given Mesoblast the go-ahead to launch a clinical trial testing its cell therapy remestemcel-L-rknd in children with Duchenne muscular dystrophy (DMD). The trial aims to enroll 76 kids with DMD ages 5-9 who are receiving standard-of-care therapies. Participants will be randomly assigned to receive infusions of the…
-
Quest Podcast: From Roadmap to Emmy: Samuel and Dan Habib on Filmmaking, Family, and Disability
In this Quest Podcast episode, we chat with Emmy Award-winning filmmaker and disability advocate Samuel Habib and his father and longtime collaborator Dan Habib, the creative duo behind the extraordinary documentary The Ride Ahead. In the film, Samuel opens up about his personal journey into adulthood — navigating housing, employment, relationships, and higher education while…
-
In Case You Missed It…
Quest Media is an innovative, adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. With so many valuable…
-
Seeing ‘Les Misérables’ reminds me of the arc of my own life with DMD
Last Saturday, I attended “Les Misérables: The Arena Spectacular” with my girlfriend at Marina Bay Sands in Singapore. This landmark resort includes a luxury hotel, a shopping complex, and a performing arts theater that hosts international productions. A musical based on the novel by Victor Hugo, “Les Misérables“ is about second chances, justice, love, and…
-
‘Be Their Muscle’ MDA campaign marks 10 years of workouts, fundraising
The Muscular Dystrophy Association (MDA) and Burn Boot Camp, partnering once again for the 10th annual Be Their Muscle campaign, are calling on everyone across the U.S. to join a workout and help raise awareness and funding to support the neuromuscular disease community. Throughout April, more than 400 Burn Boot Camp locations in 44 states will unite…
-
Ambassador Guest Blog: How I Use My Voice by Volunteering – and Why You Should Too
K.L. Cleeton is an entrepreneur, writer, and advocate living with Spinal Muscular Atrophy in rural Illinois. He writes about disability, identity, and the systems that shape how we live at KLCleeton.com. This February, I’ve been spending my Tuesday and Thursday evenings on a video conference with a group of young entrepreneurs and creatives through the…
-
How to combat social isolation while growing older with muscular dystrophy
As I grow older with limb-girdle muscular dystrophy, one of my biggest challenges isn’t medical; it’s social isolation. When I was younger, it was easier to say yes to all kinds of social activities. That is likely true for all of us, but with a power wheelchair, progressive muscle weakness, and general fatigue, I decline…
-
5 ways your DMD care team can make treatment access easier
Getting Duchenne muscular dystrophy (DMD) treatments covered shouldn’t feel like a second job, but it often does. Between insurance denials, endless paperwork, and high medication costs, treatment barriers can pile up fast, making DMD treatment access more difficult. Your DMD care team does a lot behind the scenes and can help you navigate insurance and…
-
Making time for self-care is vital in DMD caregiving
I live in rural Nebraska with my husband, Jason, and seven children. Three of them — Max, 20, Rowen, 17, and Charlie, 15 — live with Duchenne muscular dystrophy (DMD), so I am a mom to many as well as a caregiver. At times, it feels like I’m giving everything I have to my family.…
